Thursday, December 18, 2008

Biopsied, transfused, and still wondering

Joe drove me to Boston today. I was glad to have his company, and it helped undercut my anxiety. Still, with the way things have been going, I took a pre-visit half an Ativan (.5 mg) in the car.

Thanks to everyone who called, e-mailed or commented on the last post. The support in general really helped, as did the suggestions on how to get my mind off my worst fears.

The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. Not to mention the blood (sorry!) that kept building up around my gums. (“Not to mention” is one of my pet peeves. I always think, “If you’re not going to mention it, then why did you?” But, hey, it’s my blog and I’ve had a hard week and I feel like breaking a rule.)

I packed a bag, expecting to get admitted into the hospital. This might have been a reverse way of trying to stay out of the hospital, because when I was admitted six months ago, I didn’t take a bag. Well, I was not admitted. I’m sure that the bag didn’t have anything to do with it, but, whatever.

As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? Another place not to go, as in, “That tree that looked so sturdy yesterday went and fell on me today?”

After my bloodwork and while I was waiting for my appointment, a group of high school carolers wearing Santa hats and reindeer antlers came into the waiting room and started singing the standards. “Tis the season to be jolly,” they sang, along with “Rudolf the Red Nosed Reindeer,” “Silent Night” and others. Sometimes a harpsichordist or other instrumentalist plays in the outer waiting room that is usually not so packed. This is where these kids belonged, where people could wander over and listen if they felt like it. It was through no fault of their own that they ended up crammed in almost on top of the patients; somebody put them there in what seemed like an exercise in cheering the patients up.

But you could see that many, like me, were having a hard enough time keeping it together. One woman moved further away. I took the other half an Ativan and opened up Joe’s early Hanukkah present to me, “Born to Kvetch: Yiddish Language and Culture in All of its Moods,” by Michael Wex. I'm just starting the book, which begins with a discussion of the satisfaction that Yiddish-speaking Jews long ago derived from kvetching, or complaining: “Kvetching becomes a way of exercising some small measure of control over an otherwise hostile environment.”

OK, forgive me, I kvetched, but only in my head and now in print. I was extremely on edge. I just wanted to stay inside my bubble.

I talked to both Melissa and Dr. Alyea today. They said the low counts could still be from the virus and drug reaction, or, as Dr. Alyea had already said, they could be due to the same thing that happened before: some part of me starting to push the donor cells out. So, for all my talk about not being hit by a bus in the same spot, it actually might happen.

The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture. I began to relax a little when Dr. Alyea started discussing possible options, which I will leave to a later post. I think some of us get to a bump in the road and write ourselves off. Using one of my late father’s favorite words, I told them I had been imagining my demise. (My father kept a folder labeled, “In case of my demise.”

Dr. Alyea said he did not picture my demise. “I picture you playing tennis with a high platelet count,” he said.

I am so drained from worry and anxiety that I think I can let it go for now. There are options. My demise is not imminent. A storm is coming, and I have a date with a friend to drink coffee and watch our dogs play in the snow. That should be fun.


Susan C said...

That was a scary low platelet count last week.

I'm sitting on pins and needles with you. And, like your doctor, I'm imagining you playing tennis with a high platelet count.

susiegb said...

Me too. I wish there was something I could do to help ... I hate the waiting, the not knowing. But ... ain't nothing we can do, is there.

I am thinking of you here on the other side of the world. And I'll make sure to check your blog while I'm down in NSW at my Mum's for Christmas ... With everything crossed for a happy outcome. :)

One Mother with Cancer said...

I've been thinking about you, I hope your counts start to come back up.

PJ said...

You've earned the right to kvetch wildly. And you were wise to pack that bag--a good talisman.

Dr. Alyea is the guy to listen to. Demise schemise (add yiddish accent).

As usual, you've written beautifully about what you're dealing with. I just wish the material would stop already.

rc said...

it's not easy to think positively with uncertain news on the horizon, but of course that is when positive thinking is most called for...and in the spirit of good yiddish...can't hurt...just look outside...with cloudy weather ahead you hope for the storm to pass...

donna said...

I am so mad at your stupid virus and your low counts! Don't they know that I can't get to be a better tennis player without you showing me how to hit those great angled shots at the net among all the other things you can do? You have every right to feel low. You have had enough road blocks for 10 people. I can't wait until you're back!

Vytas said...

This is a very strange business we're in. Often unpredictable. But remember, we ALWAYS have back up plans to get you on the right track. And we will.

RC is right. Every storm passes and the sun comes out again!

Ann said...

You're not alone. I'm thinking of you daily and sending positive vibes your way. I look forward to reading your blog every day and am so grateful for your candor and bravery.

Howard said...

It's time for the MIT robotics lab to start working on the kvetch-o-matic 2000. "It kvetches, so you won't have to".

Looking in on you via this blog. Hope your dogs are enjoying the snow and these storms pass as they surely must. Strong and calm thoughts from the North (snowing here too).

CLL Spouse said...

This is so OFF the topic of counts and chimerisms and attempting to gain a measure of control by packing bags or gauging risk by the spot at which you stand on the curb, but I have to say...

I'm sorry it's taken some stinkin' diseases to make our paths cross, but I'm so glad they did! From your aside about writing "not to mention" to the therapeutic value of kvetching (followed by asking forgiveness for it) to your father's 'demise' file, you've got me nodding and nodding and nodding. You're either a fly on the wall of my life or you've come for tea at some point. (Based on the number of comments that precede mine, I suspect a lot of people are feeling that way.)

Go, Ronni!

Jim said...


Stay strong and keep venting. You will be running long distances and doing more things you love soon.

Prayers from Tennessee. Jim

Nelle said...

I echo what Susan C said. Oh Ronni I wish you were close enough so I could come over with some chicken soup. The GOOD stuff. Firstly, I belive ativan is God's gift to the on edge patient. I never leave home without some with me. I also keep some in my bedside table. Sometimes I thought it would be a blessing to be ignorant about these things but my intelligence overtook those thoughts. I am keeping my fingers crossed and saying prayers that soon you will be enjoying higher counts.
By the way I simply love Yiddish words. My very favorite is ferklempt (not sure of that spelling). Enjoy the snow. We got mainly rain here which froze and now we have ice.

Baby Bird said...

I pray that you will be better very soon. But I have to tell you that, as another amazing coincidence, every month for the past year, I have sent my sister a copy of "Upon My Demise." I actually have a great time revising and "producing" all of the details of my memorial . . . who's singing what, who's cooking what, and most of all, "who's doing such n such whether they like it or not."